PSP Association
5,413 members7,431 posts

Understanding what psp is?

I though I had psp but my GP didn't understand or know anything on the subject but did say I had alhsimas so I did not take it in until I read about it in a psp book and self diagnosed myself as having psp. I still don't know if I really do have it as my GP just laughed whenever. I visit him to repeat my prescription. I have no confidence in trying to find the truth incase I'm wrong.

8 Replies
oldestnewest

You need to ask to be referred to a Neurologist. Can you take somebody with you for support when you go to the GP and to the Neurologist? It is not unusual for GP's to know nothing about PSP unfortunately.

Where do you live in the world? The help you are entitled to varies depending on which country you are in.

If you have somebody with you he might take you more seriously! If not can you afford an appointment to see a Neurologist?

As a matter of interest what tablets has he given you? I have never met him and I don't like him! Doctors don't know it all and some know very little sadly! It is not unusual to be diagnosed as having something else wrong by the way. Even by a Neurologist but they usually know a bit more than a GP!

Don't let him make you feel stupid. You are right to query what is wrong. So go back and say you need to go to a Neurologist. He is a GP not a specialist, so he is wrong not to have referred you before.

What are your symptoms by the way?

I hope you have had a nice Christmas.

Marie x

7 likes
Reply

Right on, Marie! I can't improve on your excellent reply! Peace, ec

1 like
Reply

Hello Tjcull: Good advice from Marie - I also advise, as she does, having a friend, family member or trusted neighbour go with you to the GP to nicely insist on a referral to a neurologist. If you have no such person in your life, some nurse-for-hire agencies will provide a nurse who will attend an appointment with you to be an advocate. They know how to talk to doctors, sometimes when others of us don't.

PS: I see you just joined today! Welcome, and hope you find it as helpful as we do :-)

Anne G.

1 like
Reply

Hi Tjcull,

Acording with PSPCure information

Stages of PSP and standards of care:

Early Stage (Including diagnosis)

(Years 0-1)

- Walking but falls occasionally.

- Difficulty reading due to gaze palsy.

- Mild vocal changes such as quietening of voice.

- Changes in mood.

- Reduced social interaction.

Mid Stage

(Years 2-3)

- Walking with aids.

- Limited eye movements making eating and walking more difficult

- High risk of falls.

- Speech difficult to understand.

- More impulsive behaviours.

- Marked apathy.

- At risk of choking.

- Requires a high level of supervision.

My wife suffers from PSP. The first specific symptoms show up in March 2012 : difficulty speaking as if she had a stone in her mouth and a slight tremor in the ring finger. The definitive diagnosis was done in June 2015 (after troubles in eye movements were detected, which was the specific symptom that added to the difficulty in speech and walking instability confirmed the PSP diagnosis).

I hope and I wish these notes are useful.

Hugs.

Luis

5 likes
Reply

I would add to that a change in handwriting. My husband's writing got very small and spidery - part of what caused the initial diagnosis of Parkinson's.

Maybe try printing out a simple explanation of PSP and taking it with you to your GP (along with the friend!) and going through the symptoms. Then insist on seeing a neurologist.

Reply

Thank you Luis. I live with my son and daughterinlaw who are really wonderful and understanding. I have been diagnosed with ahlsimas two years ago and my family believe what the dementia people have told them and expect me to get worse as time gets on but on reading the symptoms of psp on there catalog I feel I am having psp symptoms lhave asked my GP with my daughter inlaw present but he looked and reacted and said he didn't now about psp and referred me back to the Demeter clinic and she agreed with the doctor why do you want to have something different than what you've already got. I am really worried and confused by what I read about psp and whant to the details of what to expect the different stages to occur and In perticuler the finel days to the end.

Reply

Could be usefull:

1)PSP/CBD/MSA_Practical Methods to Improve Everyday Life

Hugs.

Luis

3 likes
Reply

Thank you for this link.........

Reply

You may also like...